Read Full Issue - Parkinson`s Disease Foundation

Summer 2015
PDF Announces New Research Investments
At the heart of the Parkinson’s Disease Foundation (PDF) strategy to solve, treat and end Parkinson’s disease (PD), are its scientific grants. We fund
leading research centers and scientists who can help
bring us closer to achieving these goals. In selecting our investments, we
must determine which ones
provide the best return —
which, for PDF, means those
that have the greatest likelihood of improving lives and
futures for people touched
by Parkinson’s disease.
To make these decisions, we open up competitive
applications, accepting ideas from scientists around
the world. Then, we continue with review of those
applications by our Scientific Advisory Board, made
up of scientists who bring experience from the lab;
neurologists specializing in PD who bring expertise
from the clinic; and people with PD who bring the
expertise of living with the disease and a personal
understanding of which problems need solutions.
IN THIS ISSUE
2 | Letter from Leadership
3|A
Research Dream Team
Discovers the Power of Saying
Thank You
4 | More Than Meets the Eye:
Managing Vision Symptoms
of PD
9 | Meet the Newest Members of
PDF’s Advisory Council
10 | How You Made a Difference
During Parkinson’s Awareness
Month
11 | PDF News & Events
Each year, we are asked why PDF takes this approach to funding science. Why not fund research
into one new theory about PD ? The answer is simple:
diversification. Too often, we have seen the latest theories on PD crumble. For example, we were all disappointed to learn that two excellent ideas — targeting
mitochondria with antioxidants and stopping LRRK2
genes with drugs — were not successful. That isn’t to
say that the ideas shouldn’t be studied — in fact, each
failure teaches us valuable lessons. But each failure also
clearly demonstrates that none of us — even the world’s
most brilliant minds — know exactly how and when that
cure will be found. In the meantime, similar to a sound
financial strategy, PDF diversifies our risk — supporting
a variety of creative ideas, rather than putting all of our
(and your) eggs into one basket. We know that many
ideas will fail, while just one or two will be the ones to
point us toward better treatments and a cure. We take
seriously the trust you place in us, and we invite you
to see how we are investing your dollars by browsing
pages 6 and 7. Stay tuned for additional funding announcements throughout the year. >> Read more on page 6
Science News |
Progress for Potential Neuroprotective Therapy
In a small study, researchers in Sweden have shown that applying a growth factor
called PDGF (platelet-derived growth factor) directly to the brains of people with
Parkinson’s disease (PD) is safe and well-tolerated. Researchers do not yet know
if it is effective in easing Parkinson’s, but their results open the door to future testing. The study was published on March 2 in The Journal of Clinical Investigation.
Growth factors such as PDGF are proteins that are thought to hold promise as PD
therapies because of their ability to help neurons — such as >> Read more on page 8
Breath Test Shows Promise for Distinguishing Parkinsonian Disorders
A relatively simple breath test may one day help diagnose Parkinson’s disease
(PD) and distinguish the disease from disorders with similar symptoms, according
to a study published in the February issue of Parkinsonism and Related Disorders.
Doctors diagnose PD mainly by studying and interpreting a person’s movement
symptoms. However, it can be difficult to distinguish classic Parkinson’s disease
from other PD-like conditions, such as Parkinson’s plus syndromes — especially
during the early stages of the disease. Researchers led by >> Read more on page 8
www.pdf.org
Letter from Leadership
Dear Friends:
How do we capture rising stars
in science and encourage them to
focus their attention on Parkinson’s
disease (PD)? This is a question that
the Parkinson’s Disease Foundation
(PDF) — in its long quest to help
solve, treat and end PD — has been
evaluating since its creation more
than 60 years ago.
“[We] need to
capture rising stars
before they drift
away from the
field for lack of
career options.”
Robin Elliott
In fact, PDF’s focus on catching rising stars in PD is the reason
why we have prioritized funding for
the training of early-career neurologists — more than 100 of them over
the years — in Parkinson’s disease
research and care. It is also the reason we have supported the research
of more than 250 early-career basic
scientists over the same period.
Recently, PDF took a new look at
the life-cycle of a Parkinson’s scientist.
At once, we saw the need to capture
rising stars before they drift from the
field for lack of career options. And
we realized that we must do more.
The facts are startling. We
reviewed data that traced careers of
scientists from the time they enter
graduate school — whether for medicine or for basic science — to the
time they receive their first research
In Our Inbox
grant from the National Institutes of
Health (NIH). We found that between
1980 and today, the average age at
which scientists received their first
NIH grants went up nearly 10 years
— from the mid-30s to the mid-40s.
Not only that, but among all scientists who receive major NIH support,
the percentage who are “young” (35
years and under) at the time of their
first grant dropped from 12 percent in
1980 to almost zero today.
Such changes have redefined the
definition of an “early career” scientist. They have also meant a sharp
increase in the burden on the scientists themselves, who want to stay
in the field of PD but simply cannot
afford to wait out the time that may
never come. It is a “valley of death,”
a time during which scientists decide
whether to stay in research or to
take an alternative path. The strain
is such that we are losing some of
the brightest minds from the fight
against Parkinson’s disease.
This is the backdrop to PDF’s
increased commitment of funds to
support young scientists through
the “valley of death” period (see
page 7). If we are to have a chance
of keeping the people we need to
lead Parkinson’s research in the next
generation, we can do no less.
Sincerely,
Robin Anthony Elliott
President
PDF Community Choice Research Awards:
Voters Weigh In
Dystonia is important for researchers to study
because it has such a big impact on function
and quality of life. I wonder: if the topic is
researched, could the timeline for finding
better treatments be shortened?
Cindy Bittker, Hull, MA
Every person with PD fears cognitive impairment. If you cannot count on your brain to
support you, you feel like you have lost some
of yourself. My priority is for PD researchers
to study cognition so we can find strategies
for keeping our brains as healthy as possible.
Diane Cook, Denver, CO
My priority is for researchers to study palliative care in its true definition — care
that begins at PD diagnosis and continues
through death. We need better ways of
offering education, support, and properly
managed care, from the moment someone is
diagnosed until the very end of life.
Kirk Hall, Denver, CO
I would like researchers to study palliative
care to help answer specific questions such
as, “how can we accurately predict when during the progression of Parkinson’s, palliative
care and hospice care will be needed?”
Gil Thelen, Tampa, FL
Apathy is my priority for PD researchers.
The knowledge that it is a symptom of PD
has been an important step for me in fighting
it, but it is still a daily struggle. We need
scientists to help us find ways of identifying,
measuring and overcoming it.
A.C. Woolnough, Sandpoint, ID
[Note from the editor: PDF opened the
Community Choice Research Awards survey
during April to get your feedback on research priorities. Stay tuned later this year,
when we choose two topics suggested by
the PD community and fund scientists with
$20,000 research grants to study them. See
full responses from the individuals above by
visiting blog.pdf.org. PDF thanks its People
with Parkinson’s Advisory Council and the
ProjectSpark Foundation for their support
and partnership on this initiative.]
Coming Soon
Occupational Therapy: Across the PD Continuum
Thursday, December 3, Dallas, TX and online
A professional course designed by and for
occupational therapists. CEUs available.
[email protected] | (800) 457-6676
2 | PAR K IN SO N ’S D IS E A S E F O U NDAT I O N
Share comments and
suggestions with the
Parkinson’s Disease
Foundation at 1359 Broadway,
Suite 1509, New York, NY 10018,
[email protected] or (800) 457-6676.
Spotlight on Research |
A Research Dream Team Discovers The Power of Saying Thank You
How would you answer if you were asked, “who
is advancing the science of Parkinson’s disease (PD)?”
You might begin by talking about the scientists who are
doing the difficult work of seeking new treatments and
a cure. But what about the people who live with PD and
their care partners? After all, these individuals are in their
own way experts who understand what it is really like to
live with Parkinson’s day in and day out.
PDF believes that when these two kinds of experts
work together — the scientists who study PD and the
people who live with it — they become a research
“dream team” that can more quickly solve, treat and end
PD. This seems to be the case for one team that includes researchers Patricia Ede, R.N., and Martha Nance,
M.D., of Struthers Parkinson’s Center in Minneapolis,
MN, and Kim Erickson and Libbe Erickson, R.N., PDF Research Advocates from Stillwater, MN (Kim lives with PD).
Last year, PDF awarded the team a Parkinson’s Advocates in Research (PAIR) Leadership Award to conduct
a small clinical study entitled Participant Retention in
Parkinson’s and Huntington’s Clinical Studies. Using a
grant of $5,000, they pondered a central question in PD
science: why don’t more people volunteer for PD trials, when the lack of participants delays studies and in
turn, the development of treatments? Instead of simply
asking, “why can’t we attract more people?” they asked,
“what motivates the people who do participate?” What
can we learn about them that may help us encourage
more people to participate, thus speeding research?
To find the answer, Pat developed a survey with the
help of Catherine Wielinski, M.P.H., Research Director at
Struthers, and Kim and Libbe used their insights to modify it, making it easy to read and complete. They sent it to
65 people who had completed studies at Struthers.
“The overall goal was to find out which factors would
make people enroll, stay in or drop out of PD studies.
The factors we looked at included demographics (gender, age, ethnicity); distances that people had to travel;
their motivations; and which parts of study participation
they found rewarding or difficult,” said Kim.
Kim and Libbe’s input paid off — a remarkable 80
percent of people returned their surveys. So, why did
people stay in studies? Was it for access to medical care
or researchers, or for any kind of compensation?
“The results were surprising,” says Libbe. “When we
asked people what kept them in studies, overwhelmingly,
they said it was because they felt they were giving back.”
The team admits that its study is small and has limitations. For instance, the people who did not participate
About PAIR Leadership Awards
• Support projects conducted by teams of researchers and patient advocates that have the potential
to accelerate PD research.
• In 2014, PDF supported four PAIR Leadership
Awards with $20,000. They supported researcherpatient teams studying clinical trial retention (profiled here), telemedicine, the benefits of singing
for PD, and strategies for building PD researcherpatient collaborations.
• Application period is rolling and is open now.
PDF believes that bringing together the two kinds
of experts in Parkinson’s — those who study it and
those who live with it — will help us to more quickly
solve, treat and end Parkinson’s disease.
To see a video of Kim and Libbe discussing this
study, visit www.pdf.org/youtube.
From left to right: Martha Nance, M.D.; Kim Erickson; Libbe
Erickson, R.N.; Patricia Ede, R.N.
weren’t surveyed. Might it have been that their decision
had to do with economic hardship or inability to find
transportation?
Still, the results were eye opening. “We expect
that the responses will provide researchers, funders and
participants with potential insights into study design and
incentives to help participants stay in PD studies,” says
Pat. “In fact, the results helped our team at Struthers
to recognize the impact of simply saying ‘thank you’ to
participants at each visit. It can make a difference.”
Not only did the dream team provide insight into PD
trials, they learned from each other’s expertise.
“Kim and Libbe are an integral part of our team.
We depend on their insight in our research endeavors,”
noted Pat. Kim added, “By working closely with researchers, we have learned how dedicated they are to
finding a cure and treatments for PD. Their commitment
to helping people with PD is truly astounding.”
Experts with the same goal —
­­ a dream team after all.
SU M M ER 2 015 PD F NE WS & REVIEW | 3
More Than Meets the Eye: Managing the Vision Symptoms of PD
By Daniel Gold, D.O.
Do you, or does a person you know who lives with
Parkinson’s disease (PD), experience problems with vision? Maybe it is difficult to see in the rain, or maybe it’s
that colors seem less vibrant. Perhaps the eyes feel drier
than usual. We do not usually think of issues like these as
part of Parkinson’s, which is known primarily as a movement disorder. However, the fact is that they can be a
part of the disease, and can affect everyday activities like
driving and reading. Fortunately, most vision symptoms
of PD are fairly easy to diagnose — and easy to treat.
The Eye-Brain
Connection in PD
How does
a neurological disease like
Parkinson’s affect
vision? The front
Daniel Gold, D.O.
of the eye is only
the beginning
of the complex system that allows us to see. After light
enters the front of the eye, images are focused onto the
back — that is, the retina. From there, the optic nerve
carries visual information to the brain. In PD, changes in
the eyeball itself, as well as changes in its connections to
the brain, can lead to vision issues. For a person with PD
to maintain healthy vision, it is important to undergo an
annual eye exam with an optometrist or ophthalmologist
to catch issues early on (see box on page 5).
“The most important thing is
to have an annual
eye exam and follow any tips that
are suggested by
the doctor.”
Common Vision Issues in PD
Most people with PD have normal or near-normal
vision. However, they may experience a variety of bothersome issues which, together, can impact visual function.
Here are some of the common ones.
Central and Color Vision
As we age, our ability to perceive contrast diminishes,
and this impairment can be more severe in people who
have PD. Many people with PD may have trouble seeing
fine details — for example, seeing signs when driving, or
while reading or watching TV. These complaints can be
present even for people whose vision tests are normal
during a routine eye exam.
Examples of contrast vision impairment include blurring of the edges of objects such as stairs, which can lead
to a missed step or a fall, or difficulty seeing clearly at
night. In addition, a person with PD may find that colors
seem less vibrant. It turns out that some cells in the retina
rely on levodopa, the precursor to dopamine that gets
4 | PAR K IN SO N ’S D IS E A S E F O U NDAT I O N
depleted in PD. When this occurs, the results can include
dullness of color vision and poor contrast vision.
Unfortunately, there is no good treatment for color
vision issues. To address contrast vision impairment, first
take care of any other eye health issues, and then ensure
that the prescription for eyeglasses is correct. People with
PD who experience balance problems should avoid using
progressive, bifocal and trifocal lenses. People with poor
balance rely heavily on vision and tend to look down while
walking. If they are wearing progressives or bi/trifocals,
and use the reading (bottom) portion of their glasses to
follow their feet, the visual correction at that distance will
be incorrect. This can lead to disorientation and aggravate balance issues, leading to falls.
Eye Movement
In daily life, when we need to keep our eyes focused
on an object as it moves closer to us, we use a process
known as convergence. It is common for people with PD
to have trouble doing so because of “convergence insufficiency.” They may experience double vision, headaches,
eyestrain or blurred vision. While reading, they may lose
their place, feel tired, or find that words appear to move
on the page. Or they may need to constantly adjust the
distance of reading material from the eyes.
A neurologist, ophthalmologist or neuro-ophthalmologist can diagnose convergence insufficiency and other
eye movement disorders, and prescribe a therapy. One
such therapy consists of home exercises known as “pencil
push-ups” — holding a pencil at arm’s length and bringing it to the nose, while trying to keep the tip in focus.
A quick fix for convergence issues experienced with
reading is to cover one eye, or to put Scotch tape over
one lens of reading glasses, so only one eye is used at a
time. Another option involves the use of prisms placed in
reading glasses (not distance glasses).
People with PD may receive a recommendation for
vision therapy for ocular motor dysfunction. While evidence supports its efficacy for convergence insufficiency,
there is no evidence it helps other eye issues. It can be
expensive and is sometimes not covered by insurance; so
be wary of what is being treated and covered.
The James Parkinson Legacy Society
“W
PDF like I did, you support
Parkinson’s for the next generation.
hen you make a planned gift to
their mission to end
”
Jean Dewdney, member
Contact PDF today to discuss your planned giving options.
(800) 457-6676 | [email protected] | www.pdf.org/planned_gift
Understanding Parkinson’s |
Other common eye movement abnormalities in PD
include impairments in processes known as saccades and
smooth pursuit. Saccades are the quick eye movements
a person makes, for example, to switch focus from one
bird in the sky to another. In PD, saccades tend to undershoot the intended target. Smooth pursuit refers to slow
eye movements involved in tracking objects, for example,
following a bird as it flies across the sky, and in PD it may
be more choppy than smooth. There are no good treatments for these issues, but they are usually very subtle.
Blinking and Dry Eye
Keeping the front of the eye moist is essential for
good vision. Tears help the eye to see clearly, stay protected and move freely. Blinking helps squeeze out tears
and distribute them in a moist layer on the eye.
With PD, people tend to produce fewer tears and
blink less often. Some of the medications that are used to
treat PD — for example, trihexyphenidyl (Artane®) — can
contribute to dry eye. The problem may be exacerbated
further by health issues, such as menopause or autoimmune disease. Other culprits include contact lenses,
effects of eye surgeries and allergies. The result is that
people with PD often have symptoms of irritation on the
surface of the eye — dry eyes, a gritty or sandy feeling,
burning, redness or crusting on the lashes.
These problems can be diagnosed by an ophthalmologist or optometrist. The first line of treatment is to use
artificial tears (eye drops — preferably, preservative free)
three or four times a day and more in addition as needed
(e.g., while reading or watching television). If the problem
is serious, the eye care professional may advise a prescription medication. For inflamed eyelids known as blepharitis, your doctor may recommend using hot compresses or
lid scrubs (a liquid or pre-packaged pad that you place on
the eye) to ease discomfort and keep the eye clear.
Less Common Vision Changes in PD
Some people with PD experience visual hallucinations as part of the disease. Usually hallucinations are not
threatening; for example, a person might see a cat out of
the corner of the eye. They occur more often in people
with PD who experience daytime sleepiness, insomnia
or cognitive difficulties, and among those whose PD is
advanced. Almost all PD medications are able to produce or exacerbate hallucinations, although amantadine,
pramipexole (Mirapex®), rotigotine (Neupro®) and ropinirole (Requip®) are the biggest culprits. People with mild
hallucinations can often be helped with reassurance. If
hallucinations are moderate to severe, medications should
Vision Care Professionals
An ophthalmologist or optometrist can diagnose
and treat most vision difficulties that affect people
with PD, and refer you to a neuro-ophthalmologist
if further evaluation is needed.
• Optician: Not a doctor; makes glasses.
• Optometrist (O.D.): four years of optometry school
after college; examines eyes, does vision tests,
prescribes glasses and certain medications.
• Ophthalmologist (M.D. or D.O.): a doctor with
four years of medical school, plus four additional
years of ophthalmology training; diagnoses and
treats eye diseases, prescribes and fits glasses.
• Neuro-ophthalmologist (M.D. or D.O.): a neurologist or ophthalmologist (training in either neurology or ophthalmology and then fellowship training in neuro-ophthalmology) who specializes in
diseases that affect the visual pathways connecting
the eyes to the brain, disorders of the eye muscles
or nerves that can cause double vision or other
symptoms, eyelid issues, jumping vision or nystagmus, pupillary abnormalities, among others.
be evaluated and people with PD and their doctors can
consider adding a medication to ease hallucinations.
Lastly, there is literature to suggest that people with
PD may be at higher risk for certain non-neurologic eye
diseases — a type of cataract called “posterior subcapsular cataract,” and primary open-angle glaucoma. An ophthalmologist or optometrist can detect these conditions.
Keeping the Vision Clear
What can a person with PD do to maintain good vision and ease the symptoms discussed above? The most
important thing is to have an annual eye exam and follow
any tips that are suggested by the doctor. This means
that symptoms will be addressed early on to ensure the
best quality of life. Good vision is essential to doing the
things we want and need to do and luckily, most vision
difficulties in PD can be easily diagnosed and treated.
Daniel Gold, D.O., is Assistant Professor of Neurology, Ophthalmology, Neurosurgery and Otolaryngology
at Johns Hopkins University School of Medicine. He presented this topic as a PD ExpertBriefing, which is available
online at www.pdf.org/parkinsononline.
SU M M ER 2 015 PD F NE WS & REVIEW | 5
New PDF Research Investments | Continued from page 1
PDF Research Centers
$1,661,150
Allow talented scientists to collaborate on basic, translational and clinical research.
Columbia University Medical Center
Un Jung Kang, M.D., Principal Investigator
Roy N. Alcalay, M.D., M.S.
Robert E. Burke, M.D.
Lorraine N. Clark, Ph.D.
Stanley Fahn, M.D.
Blair Ford, M.D.
Jill S. Goldman, M.S., M.Phil.
Lloyd A. Greene, Ph.D.
Sheng-Han Kuo, M.D.
Oren Levy, M.D., Ph.D.
Elan D. Louis, M.D., M.Sc.
Karen Marder, M.D., M.P.H.
Pietro Mazzoni, M.D., Ph.D.
Eugene Mosharov, Ph.D.
Serge Przedborski, M.D., Ph.D.
Seth L. Pullman, M.D.
Yaakov Stern, Ph.D.
David Sulzer, Ph.D.
Jean Paul G. Vonsattel, M.D.
Cheryl H. Waters, M.D.
Ai Yamamoto, Ph.D
Jennifer G. Goldman, M.D., M.S.
Deborah A. Hall, M.D., Ph.D.
Katie Kompoliti, M.D.
Jeffrey H. Kordower, Ph.D.
Leo Verhagen-Metman, M.D., Ph.D.
T. Celeste Napier, Ph.D.
Kalipada Pahan, Ph.D.
Kathleen M. Shannon, M.D.
Glenn T. Stebbins, Ph.D.
Dustin R. Wakeman, Ph.D.
Rush University Medical Center
Christopher G. Goetz, M.D., Principal Investigator
Brandon R. Barton, M.D., M.S.
Bryan A. Bernard, Ph.D.
Cynthia L. Comella, M.D.
PDF International Research Grants
$330,000
Promote innovative research that has high potential to advance knowledge of Parkinson’s.
Novel Insights into the Properties and
Fate of Naturally Secreted
Alpha-synuclein*
Georgia Sotiropoulou, Ph.D.,
University of Patras, Greece
Striatal CaV1.3 Calcium Channel
Silencing as a Neuroprotective Target
for Levodopa-induced Dyskinesias*
Kathy Steece-Collier, Ph.D., and
Fredric P. Manfredsson, Ph.D.,
Michigan State University
Neuroprotection by XPro1595 in a
Chronic MPTP Monkey Model of
Parkinson’s Disease*
Malú Tansey, Ph.D., and Yoland Smith,
Ph.D., Emory University
Dysfunctional Signaling Mechanism
of Neurotransmission in Parkinson’s*
Zhenyu Yue, Ph.D., Icahn School of
Medicine at Mount Sinai
PDF Advancing Parkinson’s Treatments Grants
$325,000
Facilitate the movement of treatments from “bench to bedside.”
Innovations Awards | $150,000
Parkinson Study Group
Michael Schwarzschild, M.D., Ph.D., and Hubert
Fernandez, M.D.
Meeting Sponsorship | $115,000
Gordon Research Conference on PD | $100,000
Emerging Research in the Etiology and Pathogenesis of a Complex Disease
David Sulzer, Ph.D., and Andrew Singleton, Ph.D.,
Columbia University Medical Center and National
Institutes of Health
Van Andel Institute Grand Challenges in PD |
$3,000
Patrik Brundin, M.D., Ph.D., Van Andel Institute
Fostering New Directions in PD Research: Movement Disorders Course for Graduate and Postdoctoral Students and Junior Neurologists | $10,000
International Parkinson and Movement Disorder
Society
American Society for Neural Therapy and Repair
Conference | $2,000
Michael Modo, Ph.D., University of Pittsburgh
* Denotes a second year of funding ** Denotes second year of funding of a three-­year award
6 | PAR K IN SO N ’S D IS E A S E F O U NDAT I O N
Conference Awards | $60,000
Global Force PD: Cell Based Therapies for PD Claire Henchcliffe, M.D., D.Phil., Lorenz Studer,
M.D., and Viviane Tabar, M.D., Weill Cornell
Medical College and Memorial Sloan Kettering
Cancer Center
PDF will support two conferences on topics
identified through the annual Community Choice
Research Awards survey. Topics are being considered by the PDF Scientific Advisory Board at the
time of printing.
PDF Research |
PDF Fellowship and Career Development Awards
$983,000
Prepare leaders in Parkinson’s research and clinical practice.
Clinical Training Fellowships | $390,500
Columbia University Medical Center
Shabbir Hussan I. Merchant, M.D., Lan Luo, M.D.,
Madeleine Sharp, M.D., Miriam Sklerov, M.D.
Rush University Medical Center
Meagan Bailey, M.D., Ian O. Bledsoe, M.D.
Postdoctoral Research Fellowships |
$300,000
Alpha-synuclein Aggregation Causes Toxicity by
Decreasing Functional Forms of the Protein
Matthew Benskey, Ph.D., Mentor: Fredric P. Manfredsson, Ph.D., Michigan State University
The Effects of Neuronal Activity on Mitochondrial
Bioenergetics in Individual Dopaminergic Neurons
Dominik Haddad, Ph.D., Mentor: Ken Nakamura,
M.D., Ph.D., Gladstone Institutes, University of California, San Francisco
Mechanisms for the Modulation of Striatonigral and
Striatopallidal Neuron Activity by Phosphodiesterase
10A Inhibition in L-DOPA-induced Dyskinesia
Fernando Padovan-Neto, Ph.D., Mentor: Anthony R.
West, Ph.D., Rosalind Franklin University
Deciphering the Mechanism of Action of Parkin Using
a Structure-based FRET-reporter System
Matthew Tang, Ph.D., Mentor: Edward Fon, M.D.,
Montreal Neurological Institute, McGill University
Novel Deep Brain Stimulation Paradigms on Treating
Parkinsonian Non-human Primates and the Underlying Physiological Plasticity
Jing Wang, Ph.D., Mentor: Jerrold Vitek, M.D., Ph.D.,
University of Minnesota
Phosphorylated Alpha-synuclein Peptides as
Biomarkers of Parkinson’s Disease
Li Yang, Ph.D., Mentor: Jing Zhang, M.D., Ph.D.,
University of Washington
Collaborative Fellowships | $142,500
PDF-AANI Clinician-Scientist Development Award |
$52,500
(In partnership with the American Academy of
Neurology Institute)
Parkin Overexpression as a Therapeutic Strategy**
Amber Van Laar, M.D., Mentor: J. Timothy Greenamyre, M.D., Ph.D., University of Pittsburgh Medical
Center
PDF-PSG Mentored Clinical Research Award |
$50,000
(Funded by a grant from PDF to the Parkinson Study
Group)
Comparative Evaluation of Data-driven Parkinson’s
Disease Subtypes for Clinical Research
Tiago Mestre, M.D., M.Sc., Mentor: Connie Marras,
M.D., F.R.C.P.C., Ph.D., University of Ottawa
PDF-HHMI Year-Long Medical Research Fellows
Program | $40,000
(In partnership with Howard Hughes Medical Institute)
Correlation of SIRT6 Expression with Differential Vulnerability of Dopaminergic Neurons to Pathology in Normal
Aging and Parkinson’s Disease
Alireza Samiei, Mentor: Mel Feany, M.D., Ph.D., Harvard
Medical School
Stanley Fahn Research Fellowships | $100,000
Two years of research support for top-ranked applicants
to the Postdoctoral Research Fellowship Program.
Functional Analysis of Dopamine-dependent Circuits
Activity in Parkinson’s Disease*
Nan Li, Ph.D., Mentor: Alan Jasanoff, Ph.D., Massachusetts Institute of Technology
In Vivo Modulation of Alpha-synuclein Phosphorylation:
Tracking Aggregates in the Living Mouse Brain
Kateri Spinelli, Ph.D., Mentor: Vivek Unni, M.D., Ph.D.,
Oregon Health & Science University
Summer Student Fellowships | $40,000
Palliative Care in PD: A Mixed Methods Analysis Project
Isabel Boersma, M.S., Mentor: Benzi Kluger, M.D., M.S.,
University of Colorado School of Medicine
Investigating Clinical and Pathological Differences in
Parkinson’s Disease and Related Alpha-synucleinopathies via Immunohistochemistry
Hannah Bucklin, Mentor: Virginia M.-Y. Lee, Ph.D., Perelman School of Medicine, University of Pennsylvania
Evaluation of Striatal Expression for AGTR1 in the Striato­
Nigral Pathway
Julia Cha, Mentor: Ann Graybiel, Ph.D., Massachusetts
Institute of Technology
Role of Glutaredoxin 2 in Mitochondrial Integrity and
Dopaminergic Protection in C. elegans Model of PD
Pierce Curran, Mentor: Shu Chen, Ph.D., Case Western
Reserve University
Testing the Protective Ability, Mechanism, and Stability
of Guanabenz Derivatives for Potential Use in Parkinson’s
Disease-Targeted Neuroprotective Therapy
David Dai, Mentor: Lloyd A. Greene, Ph.D., Columbia
University Medical Center
Effects of Inosine on Blood Glutathione in SURE-PD Trial
Daniel Di Luca, Mentor: Michael Schwarzschild, M.D.,
Ph.D., Massachusetts General Hospital
Evaluating c-Abl Phosphorylation of Parkin in Animal
Models of Parkinson’s Disease
Preston Ge, Mentor: Ted Dawson, M.D., Ph.D., Johns
Hopkins University School of Medicine
Regulation of LRRK2 Activity Through PIRB
William Pan, Mentor: Zhenyu Yue, Ph.D., Icahn School
of Medicine at Mount Sinai
Gastric Administration of Paraquat and Lectins Linked to
the Parkinsonian-like Gastric Dysmotility in Rats
Michael Skolka, Mentor: R. Alberto Travagli, Ph.D., Penn
State Hershey College of Medicine
Role of the Subthalamic Nucleus in Blink Suppression
Maryam Vaseghi-Shanjani, Mentor: Robert Chen, M.A.,
M.B.BChir., M.Sc., F.R.C.P.C., Toronto Western Research
Institute
Student Travel Awards | $10,000
A Common Genetic Variant Is Associated with Altered
HLA Expression and Parkinson’s
Keystone Symposia: Neuroinflammation in Diseases of
the Central Nervous System George Kannarkat, Mentor: Malú Tansey, Ph.D., Emory University
Augmented Beta Rectangular Regression Models: A
Bayesian Perspective
Eastern North American Region International Biometric
Society Spring Meeting Jue Wang, Mentor: Sheng Luo,
Ph.D., University of Texas Health Science Center at
Houston
The Neuroprotective Potential of Subthalamic Nucleus
Deep Brain Stimulation in an Alpha-synuclein Overexpression Rat Model of Parkinson’s Disease
19th International Congress of Parkinson’s Disease and
Movement Disorders
David Luke Fischer, Mentor: Caryl E. Sortwell, Ph.D.,
Michigan State University
Does Anxiety Compete for Processing Resources During
Walking and a Dual-task in Parkinson’s?
International Society for Posture and Gait Research
Congress
Brittany Intzandt, Mentor: Quincy J. Almeida, M.Sc.,
Ph.D., Wilfrid Laurier University
The Role of DJ-1 in Grx1 Mediated Dopaminergic
Neuronal Protection
Gordon Conference on Oxidative Stress and Disease
William Johnson, Mentor: John Mieyal, Ph.D., Case
Western Reserve University
Genetic Variation and Cognitive Impairment in Parkinson’s Disease Patients from Uruguay
19th International Congress of Parkinson’s Disease and
Movement Disorders
Andrés Lescano, M.D., Mentor: Ignacio Fernandez
Mata, Ph.D., University of Washington
rAAV-mediated Regulation of Striatal Nurr1 Expression
Alters Development and Severity of Levodopa-induced
Dyskinesias in the 6OHDA Rat Model of Parkinson’s
18th Annual Meeting of the American Society of Gene
& Cell Therapy
Rhyomi Sellnow, Mentor: Fredric P. Manfredsson, Ph.D.,
Michigan State University
* Denotes a second year of funding ** Denotes second year of funding of a three-­year award | grants.pdf.org
SU M M ER 2 015 PD F NE WS & REVIEW | 7
Science News |
Potential Neuroprotective Therapy* | Continued from page 1
the dopamine neurons that are lost in PD — grow and
connect to each other. In fact, earlier studies of PDGF
showed that the growth factor restored dopamine activity and lessened PD-like motor symptoms in animals. In
this new study, researchers led by Anders Haegerstrand,
M.D., Ph.D., at Newron Sweden AB, tested the safety
of PDGF in human volunteers. Twelve people with
moderate PD were divided into four treatment groups.
The groups received either a form of PDGF (PDGF-BB)
directly into the brain in one of three doses (0.2, 1.5 or 5
micrograms), or a placebo (an inactive substance), every
day for 12 days. Participants’ brains were scanned with
PET before treatment and after four months.
Results
• All participants completed the study. None had adverse effects attributable to PDGF-BB.
• All participants, including those who received placebo, improved their scores on the standard UPDRS
Breath Test* | Continued from page 1
Hossam Haick, Ph.D., and Samih Badarny, M.D., at
Technion-Israel Institute of Technology, in Haifa,
analyzed molecules in the breath of 97 people — 44
people with PD, 16 people with a variety of Parkinson’s
plus syndromes and 37 healthy individuals.
Two breath samples from each participant were
passed over an “electronic nose,” a sensor called a
nanoarray. The presence and quantity of certain molecules create a breath “signature.” The researchers followed participants for three years after the breath tests.
Results
• About 88 percent of the time, the breath test correctly distinguished study participants who had a
diagnosis of Parkinsonism from those who had other
PD plus conditions.
scale of symptoms by a clinically significant amount
(about 4.5 points).
• PET scans 90 days after treatment revealed a slight increase in dopamine activity in participants who received
PDGF-­BB but not in those who received placebo.
What Does It Mean?
This study is the first to test PDGF-BB in humans and
its primary purpose was to establish the drug’s safety.
While it showed that the growth factor can be used
safely in people with PD, it does not yet support any
conclusions about the treatment’s potential to protect
neurons and raise dopamine levels in PD, for which additional and larger trials are needed. Further study is also
needed to understand how PDGF works. When clinical
trials of a different growth factor, called GDNF, were conducted in PD a decade ago, the results were disappointing and safety concerns were raised. However, scientists
have learned from this failure and there remains hope
that growth factors may prove effective at combating PD.
• A
bout 85 percent of the time, breath analysis correctly distinguished between people who had Parkinson’s plus syndromes and healthy individuals.
What Does It Mean?
The new study suggests the possibility that our
breath may offer a simple, noninvasive way to distinguish PD from syndromes with similar symptoms.
Studies with larger numbers of participants will be
needed before any firm conclusions can be drawn, but it
seems from this preliminary study that the breath of people with PD contains higher-than-normal concentrations
of several chemical compounds. This knowledge may
help scientists to better understand how changes in a
person’s metabolism lead to changes in the breath, which
in turn may provide some new avenues for creating tests
to identify and differentiate PD from other conditions.
More Science News on PDF.org
• Scientists Identify a New
Parkinson’s Disease Gene
• Parkinson’s Affects Both Lowand High-Contrast Vision
* To read the full summaries of these two stories, visit www.pdf.org/science_news.
8 | PAR K IN SO N ’S D IS E A S E F O U NDAT I O N
www.pdf.org/science_news
PDF News |
Meet the Newest Members of PDF’s Advisory Council
The Parkinson’s Disease Foundation (PDF) is pleased to introduce the newest members of its People with Parkinson’s
Advisory Council. PDF created this council in 2006 to ensure that the perspectives of the people living with the disease
are integrated into our work. The council is made up of individuals from around the US — all of whom live with Parkinson’s or are care partners — who bring the professional skills and personal experiences to advance PDF’s goals of supporting families and ending the disease. Meet our newest members and learn what motivates them to work with PDF.
“We all live unique PD stories. As someone who is bilingual and bicultural, I am interested
in working with PDF to ensure that people with Parkinson’s are able to articulate our experiences to our health teams, to have greater influence over our care and achieve better
quality of life.”
Julio Angulo, Ph.D., Mesa, AZ
Dr. Angulo is a retired clinical and forensic psychologist who ran his own
private practice for more than 30 years.
“Parkinson’s disease forced me to give up my first career in science. But I found a second
one — working with PDF to ensure that people with Parkinson’s disease are informed
about scientific research and involved in clinical studies.”
Girija Muralidhar, Ph.D., Poway, CA
Dr. Muralidhar is a retired research scientist who worked in the field of
immunology for 30 years to develop new vaccines and treatments.
“I have come to see my diagnosis of Parkinson’s disease as an opportunity to give back.
Given my professional experience in leadership development, I am excited to work with
PDF in supporting the scientists, health professionals and patient advocates who are shaping the future of research and care.”
Daniel Novak, Ph.D., Fort Worth, TX
Dr. Novak is a leadership consultant, executive coach and assistant
professor of business administration who spent 30 years in executive
roles at IBM.
“My recent diagnosis shed light on the challenges of living with a chronic disease in a rural
community. I am enthusiastic about working with PDF to bring information and support to
people with Parkinson’s and care partners who reside in rural or remote areas.”
A.C. Woolnough, Sandpoint, ID
Mr. Woolnough is a retired high school principal and English teacher
with more than 35 years of experience in Alaska, California and Idaho.
“In my first year living with PD, it has become clear to me that so many of us are hungry for
information after our diagnoses, but do not know where to look. I look forward to helping
PDF advance its educational programs to share information with those who need it most.”
Alan B. Zimmerman, Knoxville, TN
Mr. Zimmerman is a veteran of the US Navy, and a retired real estate
broker and small business owner.
We thank our departing members for their years of service, friendship and dedication:
Christine Colón, M.S., L.C.G.C., Maria De Leon, M.D., Thomas A. Palizzi, Marc Sherman, J.D., Fred Woodlief, D.D.S.
See the latest council list on page 12 or by visiting www.pdf.org/ppac.
SU M M ER 2 015 PD F NE WS & REVIEW | 9
PDF News & Events |
Made a Difference During
Y
U
Parkinson’s Awareness Month
April is Parkinson’s Awareness Month!
How
Join the fight
at www.pdf.org
can make a difference!
Row 1: Marilyn and Bill Wilson with fellow PDF Research Advocates Joel Davis and Sarah Shed (Jacksonville, FL); PDF Research Advocate Jane Gaydos and friends; Ms.
Gaydos’ PD awareness display (Cleveland, OH); PDF Research Advocate Jane Denmark and Roger Aubrey, P.T. (Bay Minette, AL); Mabel Johnson, designer of PDF’s
awareness t-shirt, with PDF President Robin Elliott and advisory council members Maria De Leon, M.D., and Karen Smith (New York, NY). Row 2: PDF Champion Ray
Parhad at the Flying Pig Marathon (Cincinnati, OH); The Mid-Hudson PD Support Group at its annual Walk Over Water (Poughkeepsie, NY); PDF Champion Michael Scire
at the NYC Half Marathon (New York, NY); PDF Champion Jean Everett at Stomp for Parkinson’s (Athens, TX); Carol Buttenham in support of David G. Smith’s fundraiser
(Nashville, TN). Row 3: PDF Research Advocates John Tomeny (left) and Tom Shiftan (third from left) and Barbara Rembiesa (center), CEO of the International Assn. of
Information Technology Asset Managers (San Diego, CA); PDF’s People with Parkinson’s Advisory Council (New York, NY); PDF Research Advocate Greg Hardoby (Rahway, NJ); PDF Champion Gene Ginsberg, M.D., at piano recital for PD (Sarasota, FL); PDF Champion Angela Bradshaw’s country music concert fundraiser (Lumpkin, GA).
Where in the World is the PDF Tree Ribbon?
During April, many members of the PD community shared photos of the PDF tree ribbon in action. Below are just a few of the
touching and creative photos sent to PDF from across the US (from San Francisco to New York City) and from around the
world (from Iceland to New Zealand!). Thank you for inspiring the community and raising awareness around the globe.
From left to right: Row 1: Debbie Zierzewski Sawdy, Cynthia Grinspan (Iceland), April and Mitch Lechelt, Kirby family (Pennsylvania), Nicole Anderson (North
Dakota); Row 2: Jen and Lola (Illinois), Bonny Snyder, Val Wicker (Arizona), Erin Prohaska Coltvet (Maine), Shannon Griffin Weick (Minnesota).
10 | PARK IN SO N ’S D I S E A S E F O U NDAT I O N
PDF News & Events |
Volunteers Raise More Than $170,000 by Celebrating Spring & Hosting Cocktails for the Cause
On March 4, Co-­Chairs Stephanie Goldman-Pittel, Amy Sole and Doug Stern, welcomed 100 guests to An Evening
of Vodka Tasting at Harvest Bistro & Bar in Closter, NJ, raising $27,000. On April 1, PDF and the Young New Yorkers for
the Fight Against Parkinson’s committee led by Co­-Chairs G. Pennington Egbert III, Gregory and Barbara Romero, Jonathan E. Romero, Jr., Missy Egbert Sheehan and
William B. Sheehan, welcomed 300 supporters
to the eighth annual Celebrate Spring New York
at TAO Downtown, raising $91,000. On April
24, PDF and a committee of young professionals led by Co­-Chairs Rehana Ashraf, Kate Evans
and Anne Greene, welcomed over 175 guests to
From left to right: Amy Sole, Doug Stern, Stephanie Goldman­-Pittel; Jonathan E.
the third annual Celebrate Spring Boston at The
Romero Jr., Missy Egbert Sheehan, G. Pennington Egbert III, Barbara Romero,
Gregory Romero; Anne Greene, Kate Evans, Rehana Ashraf.
Liberty Hotel, raising more than $53,000.
PDF Announces Expansion of Scientific Advisory Board
On March 12, the Parkinson’s Disease Foundation (PDF) announced the expansion of its Scientific Advisory Board,
led by Stanley Fahn, M.D., PDF Scientific Director and Emeritus Chief of Movement Disorders at the PDF Research
Center at Columbia University Medical Center. New members include Un Jung Kang, M.D., H. Houston Merritt Professor of Neurology and Chief of Movement Disorders at the Columbia University Medical Center; Matthew J. LaVoie,
Ph.D., Associate Professor in the Brigham and Women’s Hospital Ann Romney Center for Neurologic Diseases and
Harvard Medical School; and Margaret E. Rice, Ph.D., Professor in the Departments of Neurosurgery and Neuroscience and Physiology at the NYU School
of Medicine. In addition, current member
Kathleen M. Shannon, M.D., Professor of
Neurological Sciences at Rush Medical
College, was appointed as Chair of PDF’s
Medical Policy Committee, a committee
of the Scientific Advisory Board. To see
From left to right: Un Jung Kang, M.D.; Matthew J. LaVoie, Ph.D.; Margaret E. Rice, Ph.D.;
the full list, visit www.pdf.org/sab.
Kathleen M. Shannon, M.D.
PDF­-Supported Scientists on the Move
In May, a group of 26 graduate and postdoctoral students and junior neurologists gathered for a four-­day course on
movement disorders in White Plains, NY, funded in part by PDF and led by The International Parkinson and Movement
Disorder Society. On April 23, PDF and the American Academy of Neurology (AAN) presented their 15th annual lectureship in movement disorders to Christopher G. Goetz, M.D., at the AAN Annual Meeting in Washington, DC. At the
same meeting, David B. Fischer, of Harvard University, recipient of the PDF­-HHMI Medical Research Fellowship, presented his poster on transcranial direct current stimulation for PD (mentor: Alvaro Pascual-Leone, M.D., Ph.D.). In February,
George Kannarkat of Emory University School of Medicine used his PDF Student Travel Award to present a poster on
the role of the
inflammation in
PD at the Keystone Inflammation Conference
in Taos, NM
(mentor Malú G.
From left to right: Students at PDF-­sponsored course; Christopher G. Goetz (fourth from left) with Alfonso Fasano, M.D., Ph.D.,
Tansey, Ph.D.).
Un Jung Kang, M.D., PDF Research Advocate Pat Davies and David Vaillancourt, Ph.D.; David Fischer; George Kannarkat.
Photo Credits: Page 10 row 3 photo 5 Country Music Concert (Credit-kWr Photography); Page 11 row 1 photo 1 Celebrate Spring NY Co-­Chairs (Credit­Sylvain Gaboury/Patrick McMullan); row 1 photo 2 Celebrate Spring Boston Co-­Chairs (Credit­-Michael Blanchard Photography)
SU M M ER 2 015 PD F NE W S & REVIEW | 11
Summer 2015
1359 Broadway, Suite 1509 | New York, NY 10018
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Disclaimer If you have or believe you have Parkinson’s disease, then promptly consult a physician and
follow your physician’s advice. This publication is not
a substitute for a physician’s diagnosis of Parkinson’s
disease or for a physician’s prescription of drugs,
treatment or operations for Parkinson’s disease.
©2015 Parkinson’s Disease Foundation
PDF Board of Directors
Officers
People with Parkinson’s Advisory Council
Marie D. Schwartz
Domna Stanton, Ph.D.
Melvin S. Taub
Scientific Editor
Founding Chairs
Christiana M. Evers
Julio Angulo, Ph.D.
Claire Berman
Howard D. Morgan
Chair
Elaine Casavant, R.N.
Constance W. Atwell, Ph.D.
Vice Chair
Diane Cook
Stephen Ackerman
Treasurer
Carol Fox
Isobel Robins Konecky
Secretary
Anthony Geraci, M.D.
Scientific Director Stanley Fahn, M.D.
Nan Little, Ph.D.
Directors
Linda M. Morgan, M.B.A., R.Ph. (Chair)
Karen Elizabeth Burke, M.D., Ph.D.
Girija Muralidhar, Ph.D.
Peter Dorn
Daniel Novak, Ph.D.
George Pennington Egbert III
Jay Phillips
Richard D. Field
Marilyn Phillips, P.T.
Stephanie Goldman-Pittel
Judi Sechter
Arlene Levine
Karen Smith (Vice Chair)
Marshall Loeb
A.C. Woolnough
Linda M. Morgan, M.B.A., R.Ph.
Alan B. Zimmerman
Timothy A. Pedley, M.D.
President
Gregory Romero
Robin Anthony Elliott
Lewis P. Rowland, M.D., President Emeritus
William Black
Page Morton Black
Blair Ford, M.D.
Editor
Managing Editor
Melissa Barry
Staff Writer
Margaret DeJesus
please recycle